AB1430 THE EXPERIENCE OF YOUNG PEOPLE WITH RHEUMATIC DISEASES TRANSFERRING THEIR CARE FROM PAEDIATRIC TO ADULT SERVICES AND THEIR SUGGESTED AREAS FOR IMPROVEMENT
Authors: L. Williamson, A. Bouraoui, E. Williams, S. Meyer, S. Mavrommatis, M. J. Leandro, C. Ciurtin, D. Sen, C. Fisher
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Transition of care from paediatric to adult services is a critical time period for patients with rheumatic diseases. A seamless transition process can aid young people in their development to adulthood, whilst also allowing them to gain independence in managing their rheumatic condition. Young people and their caregivers often express concerns to their paediatric rheumatology teams about the transition to adult services. <h3>Objectives</h3> This study seeks to explore the experience of transition from the perspective of young people with rheumatic diseases, and their suggestions for areas to address in improving the transition process. The second aim of the study is to find out whether young people want to fill out information about themselves in advance of their appointment at the adult rheumatology service, in order to help staff to get to know them better, and if so, what information they felt was important to know. <h3>Methods</h3> Anonymised survey questionnaires were given to young people with rheumatic diseases, via a scannable QR code, to be filled in prior to their rheumatology outpatient visit. All patients surveyed had transferred their care from paediatric to adult services. Further responses were sought by sending the survey questionnaire to young people with rheumatic diseases who had consented to be on a patient and public involvement and engagement (PPIE) mailing list. Survey data were analysed in Microsoft Excel. <h3>Results</h3> Average age of respondents: 18 (median), range 16-26. The majority of respondents were female (76%). 52% of patients had juvenile idiopathic arthritis (JIA), 12% had juvenile dermatomyositis, 12% had juvenile systemic lupus erythematosus, and 18% did not disclose their diagnosis. Most young people were satisfied with the transition process (satisfaction score rated 8 out of 10 (mean)). Young people perceived the following aspects of transition to have been done well: "Communication about the change", having a "named transition coordinator", having a "personal tour of [the adult hospital]", and having a "smooth process". Aspects of the transition process that young people suggested could be improved included: "more transparent and understandable medical talk", "more follow-up [appointments]", "knowing how to contact [a] named transition coordinator", feeling as though the healthcare professional was "talking to my mum rather than me", and "the general feeling of… care not being as personal". Overall, 60% of young people stated that they would be willing to fill out an electronic form prior to their appointment at the adult rheumatology service to give information that would allow staff at the adult hospital to get to know them better. When stratified by age, only 50% of 16–18-year-olds would be willing to fill out a form, whereas 80% of 19–26-year-olds would. The most commonly suggested pieces of information were: hobbies, sports, favourite school subject, goals, and career aspirations. <h3>Conclusion</h3> Most young people were satisfied with the transition process and had helpful suggestions about how this might be improved in the future. The majority of young people were willing to fill in a form to provide information about themselves in order to help adult rheumatology staff to get to know them better, especially those who were aged 19-26 years. At a critical time in young people's development, enabling them to provide information about themselves that they feel is important, may help to improve their perception of the transition process and reduce their anxiety about transferring care to adult services. <h3>Acknowledgements</h3> The work of LW has been funded by an Arthritis Australia grant. <h3>Disclosure of Interests</h3> None Declared.